As the number of people diagnosed with a chronic or life-threatening illness increases; the army of caregivers will increase. There is a continuum of caregiver roles from part-time help to round the clock caregiving. Caregivers are often family members until a time comes that the patient is too ill or too difficult to handle on a daily basis. Caregivers are vulnerable and manipulation is one of the big traps experienced by caregivers.
You would think that at the moment the patient got sick caregivers are put into a hypnotic trance abandoning their sense of free will. Everyone knows that the caregiver enters the role with one intention, helping the patient get well and maintain the highest quality of life. The manipulation comes in when the patient and the community superimposes the word "should" on the actions of the caregiver. In a never ending effort to provide the best possible care caregivers will often abandon their instinct for what is the right thing to do with an unspoken majority vote from other family member and friends.
As the primary caregiver you know the person best. You understand the illness, have probably accompanied the patient to doctor visits so you have the big picture and you make decisions based on that information.
Being a caregiver is different from parenting another person. No one needs another mother or father, but when the patient takes on the role of helpless victim, the caregiver is often expected to pick up the slack. This doesn't serve the patient or the caregiver. Part of the role of the caregiver is to be a catalyst for action. It's about helping the patient stay engaged in life, not just doing their laundry or cooking or meal.
Caregivers are often manipulated into being indentured servants. Remember this is an equal relationship. You're matching the patients need with your desire and willingness to help. Volunteer caregiving, as in the case of family members, is very different from paid caregiving. Paid caregivers, unless the patient is hostile or overly demanding are not there to have a voice, they are there to make the patients life easier. Volunteer caregivers have other motivations and sometimes love and duty are the downfall of the family caregiver.
Avoid manipulation by keeping open communication with the patient's healthcare team. Ask them what the patient should be capable of accomplishing on their own and let them do it. Don't try and "save" the patient. Manipulation needs to stop before it starts. It's a very difficult cycle to break out of and unfortunately it creates an unhealthy dependency on the part of the patient. There may come a time in the disease process when that dependency is warranted, but make it the exception not the norm.
As a caregiver you have been enlisted to be a part of the patient's journey to wellness. It's easy for caregivers to fall prey to the "shoulds" that family and friends offer as loving suggestions. If that's how friends and family feel, then allow them to provide that part of the caregiving. Stick to your guns because it's your relationship with the patient and healthcare team that should be driving the caregiving bus, not public opinion.
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